Published: 26/04/2017 Tags: Ehlers-Danlos in the News

Shira Strongin: A Voice For Those With Rare Diseases

Published in University of Virginia Healthy Balance, 04/25/2017

Sporting turquoise hair and her own unique style, Shira Strongin is a vibrant and creative teenage girl. She grew up singing and dancing, and was actively involved in musical theater. In her pre-teen years, she suffered a dance injury that would ultimately change her life. Her parents took her to the doctor for the injury, but there were other issues. This began a long journey to find the correct diagnosis.

Shira is also a writer, a trait that has come to define her since she was diagnosed with Ehlers-Danlos Syndrome and other rare diseases. Ehlers-Danlos patients have a genetic disposition to weakened body structures such as skin, bone, blood vessels, and organs that results in chronic pain, early arthritis, and even death. Shira describes her symptoms as “a Pain so Intense it rules your life…a million suns burning under your skin or feeling like a lightening bolt is being shot through your body 24/7.”

Shira and her family were at a loss long before they ever knew the name of her illness. They scoured the country for specialists who could help. They went to work trying to find a solution to Shira’s symptoms, which had become debilitating and prevented her from living a normal teenage life. She suffered from severe body pain and headaches, and her cognition had gotten so bad she couldn’t focus on homework and she missed a lot of school. Shira always believed she would graduate high school and go to college – but even this dream started to become less of a certainty.


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